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Emily's Intro...
Greetings Smiles For Sophie Forever Supporters.
Happy St. Patrick's Day! (just a little late) It was on St. Patrick's Day, six years ago when I sat down with a couple good friends to plan the first Bash and Dash. We haven't looked back since, and are now planning our sixth Bash & Dash. It's amazing to me how far we've come! This is now the 18th edition of our newsletter, so also the 18th introduction I have written. I struggle to find the words to express my gratitude to all who helped us come this far, while at the same time expressing the urgency for all the help we need to continue with our mission.
We have now awarded almost $350,000 towards meeting our mission. In addition to the research grants, family grants, and financial support we've given to St. Jude, we are also excited to be a foundational sponsor of the DIPG Collaborative and Symposium taking place in Cincinnati the first weekend in May. "The DIPG Collaborative is an association of foundations unified with the mission of efficiently funding and inspiring diffuse intrinsic pontine glioma cancer research in the hopes of finding a wider cure for cancer." The Cure Starts Now invites like minded foundations to become a part of this initiative, and they are always welcoming new foundational support.
When we first started the journey of creating a nonprofit, we had some idea of the enormous amount of work it would be. Initially we had hoped to find another nonprofit with a mission similar to the one we would create so that we could join forces with them instead of reinventing the wheel. We had no luck finding one that had a three-part mission. Websites were hard to find and navigate and Facebook was just getting started. Consequently, we established Smiles For Sophie Forever. Today, a Google search of "pediatric brain cancer foundations" gives you an endless list to explore. The Cure Starts Now is truly interested in getting all these foundations together for a common cause so that money and resources can be pooled together with the hope of finding that cure even faster. If you know of a foundation that would be interested in partnering for the sake of our kids, please have them visit dipg.org.
The Cure Starts Now focuses solely on research and has given us some great opportunities to fund research that has passed through their review board as viable. It saves us the step of working with a board of doctors, while at the same time, we have a say in which of the grants we would like to see SFSF dollars support. In our annual appeal, which is hopefully making its way to many of your mailboxes, you can see descriptions of the grants we have helped to fund. Of course, we continue to support families of children diagnosed with pediatric brain cancer. We get more requests from families than we can support. There aren't many foundations that do what we do. There have been numerous requests from families who are in jeopardy of being evicted or having their utilities disconnected because they can't pay their bills. All because parents have had to quit their jobs to take care of their very sick, and often dying child. Some parents would do anything to give their child the best care possible, but they simply cannot, because they can't afford travel to and from the hospitals and have no way of caring for their other child
ren. Some of the stories we hear are nothing short of heart-wrenching. We long to be able to provide much more than the $1,000 grants we currently award to each family, but obviously if the funds don't come in, they can't go out. We have on our website the grants we have given to more than 200 families. If you have a minute, check it out. Hopefully it will inspire you in some way to support us. There are many ways to get involved. Email me if you are interested.
So while we are proud of what we have accomplished, we are hopeful for what is to come. We enter into our busy fundraising season (read all about it below) with hopes of raising more money to support our mission, with the end goal of curing DIPG. Until then, we will keep on doing what we can, collaborating with others and counting on you for your continued support.
With gratitude and hope,
Emily Quayle
SFSF Board President
Sophie, Sarah, and Marie's Mommy | |
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Spotlight: Brooke Sides
Brooke Sides, the 12-year-old daughter of Traci and Bryon Sides was diagnosed with a tumor in the back of her brain on April 12, 2012. In the words of Brooke's mom, "Brooke had complained of headaches, ear pain, noises in her ears; she had unexplained vomiting, and then a little bit of paralysis in the right side of her face." After visits to the pediatrician and dentist, and a consult with her orthopedic doctor, the pediatrician finally recommended a CT scan. However, fortunately the insurance company recommended an MRI which revealed a mass in her brain. Brooke was then taken to Oklahoma City Medical Center.
Her comfortable life as a happy-go-lucky Hornet cheerleader came to a screeching halt when just a weekend later, she met with neurosurgeons at Oklahoma University Medical Center who scheduled her for surgery to remove the mass on April 20, 2012.
Brooke's surgery determined the tumor to be cancerous; however the doctors believed that they had removed all the cancerous cells, without damaging her brain. Although the surgery caused Brooke some difficulty using her right arm and speaking clearly, her recovery was remarkable as she walked to the bathroom the very next day. Just four days later, Brooke was released and wanted to go to Wal-Mart with her dad the day after she returned home.
A visit with the oncologist a week later confirmed the diagnosis of medulloblastoma, requiring both radiation and chemotherapy. After saying good bye to her classmates, Brooke and her family were off to Oklahoma City to begin her treatment. Brooke had a port inserted and a spinal tap before she began chemo on May 15, 2012, and radiation on May 21.
The chemo treatments often left Brooke nauseous. Although she began losing her hair, she remained positive, enjoying and partaking in swimming, shopping, and the planned fundraisers on her behalf. Her iPad touch, a gift from It Ain't Chemo made her anxious to get home to Muskogee to show her friends. The BBQ planned for her benefit was a great reason to head home for the weekend. With just two more weeks left of radiation back in Oklahoma City, Brooke was past the half-way in the radiation treatments.
Back home, the July 4, 2012, celebration called, "Freedom has a name and it's Brooke Sides," held at Hope Assembly of God Church in Muskogee found Brooke in good spirits, releasing balloons, saying goodbye to radiation. Her post radiation MRI in July indicated, "No tumors, no swelling!" The next step in her treatment involved nine, overnight chemo treatments.
In August Brooke returned to school on a half-day basis. Things seemed to be going well. During the winter holidays, Brooke was enjoying many gifts from Devon Energy, a Justin Beiber Concert, compliments of Make-A-Wish, and the Strikeforce MMA fights, courtesy of It Ain't Chemo.
However, in late January, during a clinical chemo visit Brooke's blood counts were very low, and a transfusion was ordered. Blood cultures indicated RSV (respiratory syncytial virus) and Brooke ended up spending 11 days in the hospital.
Getting back on track with the overnight chemo, Brooke endured some blood transfusions and it was recommended that she be enrolled in a homebound school program. She continued receiving both OT and speech therapy. The chemo continued to take its toll, as Brooke experienced hearing loss and swelling of her elbow, both symptoms common for chemo patients. Since Brooke had only two of the nine remaining treatments, the doctors decided to cut her chemo in half to reduce the chance of more complications. Her February MRI was cancelled as Brooke was unable to withstand the anesthesia, as she remained on oxygen at night, due to the RSV.
Keep updated on Brooke's progress by visiting her website.
As a recipient of a Smiles For Sophie Forever grant, SFSF hopes that God is on her "side," with renewed health and continued success with her treatments.
(Editor's note: SFSF welcomes the names of children to be featured as the Smiles For the Season spotlights, and would also consider including spotlight features written by our readers. For suggestions, questions, and comments contact Susie.) |
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No matter how long the winter,
spring is sure to follow.
~ Proverb |
It's almost time to hit the links
Get out those clubs! The weather has been teasing with temperatures in March nearing the 70's! (Although snow may fall the very next day.) With two June golf outings planned by SFSF, it's time to mark those golf calendars.
The 2nd Annual Ohio Golf Outing, at Sweetbriar in Avon Lake, on Legacy 18, is slated for Saturday, June 8, 2013, with a 1:00 p.m. shotgun start.
Legacy 18 is comprised of the front and back nines of Sweetbriar, providing both a link-style layout with large greens on the front nine and a more traditional East Coast feel with natural wetland areas and risk-reward par fives on the back nine. The event features 18 holes with a cart, lunch, dinner, and beverages. The cost is $125 per individual ($500 per foursome).
Register on-line or via mail-in form by visiting the SFSF website or by contacting Mike Bova at 440.476.1611 or Marc Quayle at 513.260.0649.
Less than two weeks later, the 7th Annual Michigan Golf Outing will take place at Warwick Hills in Grand Blanc, MI, on Monday, June 17, 2013. The $175 per individual fee ($700 per foursome) includes a cart, 18 holes, driving range privileges, dinner, and hors d'oeuvres.
Warwick Hills, home to the Buick Open for many years, is renowned for its large, outstanding greens and promotes birdies and good cheer on its relatively short, parkland course of just 7,127 yards.
Register on-line or via mail-in form by visiting the SFSF website or by calling Brett Quayle at 810.252.3053 or Bob Quayle at 810.241.8340.
In true SFSF fashion, both events will feature raffles, auction items, and prizes, good times, and the opportunity to support the ongoing efforts of Smiles For Sophie Forever. Enjoy a great sport while supporting a great cause. |
Bash & Dash nominated for Best of the West, again
Wahoo! The SFSF Bash & Dash has been nominated, for the fifth consecutive year, in the West Shore live well, Best of the West Competition, as the best charity race in the western Cleveland area. The SFSF event has captured the first place title three of the past four years.
The voting this year will take place on Thursday, April 11, 2013, 6-9pm, at the Best of the West Expo at La Centre in Westlake. Once again, SFSF will be among the top-three nominees from each category featuring not only the highlights of the Bash & Dash, but also the work of Smiles For Sophie Forever. At the SFSF display, volunteers will be on hand to meet with those attending, promoting SFSF, distributing brochures, displaying SFSF merchandise, and giving away goodies, hoping to increase the chance for the Bash & Dash to win the number one spot once again.
Admission to the event, which includes not only a ballot, but also a "taste" of the wares of area restaurants, organizations, and events, and an opportunity to receive promotional materials and raffle entries from many participants, is $20.00.
For an enjoyable, relaxing evening, attend the Expo, visit the SFSF display, and cast a vote for SFSF.
According to West Shore's website:
"Hundreds of West Shore live well readers have nominated their favorite places to eat, shop, explore, and experience in the western suburbs. Learn more about the west side communities, taste great food and discover the products, cuisine and services that make them Best of the West! Featuring more than 60 local businesses, this is your opportunity to vote for your favorites in over 50 categories of local food, retail and service organizations. Tickets are available for $20.00. Every ticket purchased includes a complimentary 1-year subscription to both Cleveland Magazine and West Shore live well ($14.95 value)." |
Riverview Community Schools
sponsor C3 fundraiser
The Riverview Community Schools in Riverview, Michigan, have earmarked Friday, March 22, 2013, as SFSF, C3 Day, collecting $5.00 per staff member for the privilege of dressing down or wearing jeans to work. The C3 (Casual Clothes for a Cause) days are held throughout the school year, once a month, usually the third Friday of the month. Each year staff members nominate charities at the beginning of each school year; the charities with the greatest number of nominations benefit from the collections. This is the fourth, consecutive year that Smiles For Sophie Forever has won a C3 Day slot.
To date, the C3 program has added $2,216.38 to SFSF. Many staff and students have purchased SFSF shirts which they wear on the C3 day. In the past, students were also involved in the event, also making donations throughout the day.
Susie Miklaski, Sophie's grandmother and SFSF secretary, had taught English at Riverview High School until her retirement in June, 2007. The Riverview Community still continues to support her favorite charity.
In addition to the C3 collection, the Riverview Community has donated to both Susie's Bash & Dash and her St. Jude fundraising efforts, attended SFSF events, and helped spread awareness of pediatric brain cancer.  |
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The work goes on, the cause endures,
the hope still lives and
the dreams shall never die.
~ Edward Kennedy |
SFSF Board Founders to Attend TCSN
SFSF Founders Emily and Marc Quayle will be attending TCSN (The Cure Starts Now) symposium and gala, May 4-5, in Cincinnati, Ohio. SFSF has donated a total of $42,000 to TCSN, a foundation dedicated to DIPG research and is a member of the DIPG Collaborative sponsoring the symposium. The gala is the premier fundraising effort of TCSN.
Created in 2011, the DIPG Collaborative is an association of foundations unified with the mission of efficiently funding and inspiring diffuse intrinsic pontine glioma cancer research in the hopes of finding a wider cure for cancer. As part of an initiative of the DIPG.org Symposium meeting in March, 2011, over 13 foundations met with researchers and cancer experts from around the world in the hopes of raising dedicated funds allowing for long-term protocols and registry data. The Collaborative will meet again this year at Cincinnati Children's Hospital to continue its on-going work. Click here for detailed information and the 3-day agenda.
After attending the Saturday sessions of the symposium, the pair will attend The Once in a Lifetime Gala on May 4, 2013 at the Duke Energy Center Grand Ballroom. Last year's gala was attended by nearly 900 people and generated over $300,000 for pediatric brain cancer research. As Cincinnati's most unique and sought-after gala, this year's three ring circus theme will not disappoint, featuring live entertainment from the
Cincinnati Circus and very special guest, Nik Wallenda, incredible silent and live auction offerings and whimsical themed gourmet food to match the theme.
Emily and Marc are eager to attend the events and will share highlights in the next Smiles For The Season.
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Boutique Business is Booming
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Pop top bracelets sold by BN Boutique. |
BN Boutique, the business venture and brainchild of Bianca Henline and Nicole Summerfield of Avon Lake, reported a booming business and bountiful sales over the holidays. Bianca and Nicole graciously shared their profits with SFSF. The girls donated $200 to SFSF, for which SFSF says, "Thanks so much! You girls, rock!" (see related story in December, 2012, issue of Smiles For the Season.) |
6th Annual Bash & Dash --- Off and running
Plans are in the works for this year's Bash & Dash. According to SFSF President Emily Quayle, who has outlined the endless list of tasks to be accomplished in less than four months, "Our greatest concerns are securing corporate race sponsors, increasing individual fundraising efforts, and securing volunteers to take a specific task, from start to finish."
Board VP of Awareness Sarah Smith is currently in the process of creating the race flyer so that the Bash & Dash will be officially listed with Hermes, the race promoter and Active, the on-line site for registration and fundraising. Once the sponsors and details of fundraising incentives are hammered out, the flyer will be printed and distributed.
Concurrently, the details of setting up the concession area, planning and securing the kids' activities, arranging for transportation, securing package pick-up sites, soliciting and obtaining auction and Chinese raffle items, sorting through the storage site for necessary race materials and decorations, setting up the Awareness tent, securing race marshals, getting volunteers to man the various stations throughout the park, ordering shirts, writing and sending out publicity, getting items for and packing goody bags, creating the race program, securing the DJ, etc. are just a smattering of the tasks at hand.
Emily has opened her hands and heart to those who wish to volunteer to help in any capacity. Potential and much-needed volunteers may contact Emily to discuss how to help.
SFSF thanks all past and future volunteers for all their efforts in producing what West Shore live well has deemed the SFSF Bash & Dash for three of the past four years in its annual "Best of the West" competition (see related article): THE BEST CHARITABLE RACE IN THE WESTERN CLEVELAND AREA. |
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SFSF grants near $350,000
Since December 1, 2012, the Foundation has helped 16 families and awarded $15,800 in grant money, bringing the total amount of family grants awarded to $266,678. The grand total donated by SFSF, including donations to The Cure Starts Now ($42,000) and St. Jude ($35,000), is $343,678.
Every month, the SFSF Grant Committee approves applications for financial assistance for families of children with brain cancer. The children of the families who received grants in December 2012 and January and February 2013 are:
- Anonymous, age 6 - DIPG
- Anonymous, age 15 - anaplastic ependymoma
- Vanessa, age 16 - medulloblastoma
- Cole, age 6 - medulloblastoma
- Marissa, age 9 - pilocytic astrocytoma
- Clifford, age 10 - astrocytoma
- Nadia, age 8 - medulloblastoma
- Emily, age 12 - aplastic ependymoma
- Madison, age 6 - pilocytic astrocytoma
- Orlando, age 12 - pilocytic astrocytoma
- Davinique, age 5 - optic glioma
- Larissa, age 7 - brainstem glioma
- Mackenzie, age 7 - optical pathway glioma
- Ethan, age 11 - anaplastic astrocytoma
- Sydney, age 11 - lower brainstem/upper cervical cord tumor
- Brooke, age 12 - medulloblastoma
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SFSF ANNUAL Appeal is in the Mail
With a combined theme of spring vacation, the starfish story, and "Making A Difference," the SFSF 5th Annual Appeal has been mailed to over 2300 SFSF supporters. The appeal, created and designed internally by Board members Susie Miklaski, Emily Quayle, Sarah Smith, and Robin Somers, in an effort to reduce costs and have more funds for grants, highlights how SFSF has made a difference in the lives of children with pediatric brain cancer. To date SFSF has raised and distributed more than $340,000 for charitable efforts in keeping with its mission.
The appeal asks its supporters to help make a difference by donating funds, goods, and services; attending and volunteering at SFSF events; spreading awareness of pediatric brain cancer; following SFSF on Facebook; wearing and displaying SFSF merchandise; and visiting the SFSF website for updated information.
Any SFSF supporter receiving the Appeal is asked to use the enclosed envelop to help make a difference. Anyone not in the SFSF database, who wishes to receive mailings, should contact Kristin. Kristin will be happy to include new supporters to its ever-growing database.
Last year's annual appeal added $10,996 to SFSF coffers, more than $2000 more than received from the 2011 Appeal. SFSF graciously asks, "Is your envelope in the mail?" |
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Never get tired of doing little things for others. Sometimes, those little things occupy the biggest part of their hearts.
~ Unknown |
Shoe auction benefits SFSF
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Shea Marie, with one of her three shoe designs, at Schutz in NYC. |
Several buyers were not just willing, but were able to walk in the shoes designed by Shea Marie, cousin of Emily Quayle, SFSF Board president. Shea Marie, a true fashionista and fashion blogger, who designed three pairs of shoes for the Brazilian company Schutz, while working there this past summer, wanted Smiles For Sophie Forever to share in the profits of the Schutz U.S. flagship on Madison Avenue, Nov. 8, 2012. Shea, along with two other designers, each selected a charity of her choice to receive a percentage of the profits.
Although Schutz initially agreed to give a greater percentage to the three chosen charities, the company was overwhelmed by the devastation of Hurricane Sandy which hit the east coast in late October, followed by the horrendous snowstorm in NYC, just days before the auction. Hence, the decision to donate a greater portion to the Red Cross for Hurricane Sandy victims was made. All in all, Shea donated $300 to SFSF, her designated share in the auction's profits.
According to Shea, the last-minute change simply motivated her to look for other ways to help SFSF with its fundraising efforts. "I would love to do something with you guys for my blog for SFSF," said Shea. A California native, Shea writes a blog, PeaceLoveShea.com, complete with photographs, mostly of trendy fashions, but also trends in general. Visit her blog where she hopes to create "...maybe a dedicated post (something inspirational) where people have the option to donate (to SFSF) at the end..." Shea welcomes ideas for the SFSF-related entry; email her at peaceloveshea@gmail.com.
According to Shea's mother and Emily's aunt, Michelle Petranovic, "Shea was so excited to know that she was able to name a charity, and immediately, SFSF, came to her mind."
 | | Shea Marie's three shoe designs as auctioned at Schutz. |
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Sophie's story featured at ALECPTA meeting
SFSF Board Officers Emily and Marc Quayle will be guest speakers at the upcoming ALECPTA (Avon Lake Early Childhood PTA) general meeting on Monday, April 8, 2013. Designed for families with at least one child age 6 or younger, ALECPTA is a group of local families who are committed to providing enriching opportunities for their children. Their talk is entitled "Pediatric Brain Cancer - An Inside Story." Sophie's parents will share not only Sophie's story through slides, words and video, but will also share the history of SFSF.
Emily (and Sophie's) ALECPTA playgroup members formed the first group to rally around the Quayles after Sophie was first diagnosed in 2007. And since then many more ALECPTA members have become avid supporters (and some even board members) of SFSF. Emily has been a member of ALECPTA since the fall of 2005, when Sophie was pre-school age, and remained a member with Sarah, age 6, and now with Marie, almost two. Emily has served on the board of the ALECPTA for the past five years working on four different committees.
Over the years, ALECPTA has donated a percentage of the profits from their 2012 Princess/Super Heroes Ball as well as profits from the November, 2012 general meeting 50/50 Raffle Sale to SFSF.
Marc and Emily thank ALECPTA for their efforts and for the opportunity to share Sophie's and SFSF's stories with both new and old members. |
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Never believe that a few caring people can't change the world. For, indeed,
that's all who ever have.
~ Margaret Mead |
Gamma Delta does Great Deeds for SFSF
 | | Tiara Fulton, Corinne Dmitruk, Jessy Yox, Jessica Kaydo, Jasmine Elder (standing), Charlise English and Mercedais Grissom (seated) selling cupcakes for SFSF. |
Since Gamma Delta Sorority at Cleveland State University adopted SFSF as its philanthropy early last spring, the 56-member-strong organization has been involved in a number of SFSF activities, as well as having sponsored some of their own SFSF fundraisers.
To date, Gamma Delta created a $100, CSU (Cleveland State University) raffle basket for the SFSF Ohio Golf Outing held at Mallard Creek last September; sponsored a Cup Cake War between active sisters and their potential sisters, raising $249; sold both rainbow cupcakes, decorated by the new sisters and SFSF bracelets, netting $149.00. All three bake sales were held at the CSU Student Center. In addition to their fundraising efforts, members also volunteered at last July's All-American BBQ in Avon Lake, worked and participated in the 2012 SFSF Bash & Dash, and just recently helped to assemble the 2013 SFSF Annual Appeal.
Elena Schodowski, Gamma Delta founder at CSU attended West Shore's live well Best of the West Expo last April. There Elena was intrigued by the SFSF display. Her keen interest in SFSF led to a lengthy conversation with Board Treasurer Andrea Bucci. Less than a month later, she contacted Marc Quayle about making SFSF the sorority's "charity of choice." Featuring SFSF at their spring recruitment affair, the sisters shared Sophie's story through video and brochures, assuring that the recruits knew all about Smiles For Sophie Forever. This April six new members will join the ranks of Gamma Delta. SFSF is most grateful for their work and is proclaiming a new meaning for Gamma Delta: Gals Doing Great Deeds.
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Gamma Delta Sorority Sisters |
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Rainbow confirms SFSF collection
 | | Philip Hock, Sarah Quayle and Mary Catherine Bigenho displaying the Day 6 donations to SFSF. |
In keeping with the spirit of Christmas, Ms. Julie Bartter, Sarah Quayle's first grade teacher at Eastview Elementary School in Avon Lake, sponsored a "12 Days of Giving" program prior to the Christmas recess. Day 6 was dedicated to Smiles For Sophie Forever. On this day, class members could bring in donations for SFSF. The following account was emailed to SFSF Board president Emily Quayle, Sarah and Sophie's mother, by Ms. Bartter. Her own words tell it best.
Hi, Emily!
Well, I'm sitting here emailing you from the PNC parking lot after turning in the coins we collected for SFSF, and I couldn't wait to tell you this wild story.
After school I was counting all of the coins that we had collected for Smiles for Sophie. I was about to staple the brown bag that I had put the collection jar in when I heard another teacher screaming, 'Oh, my gosh!' I went out in the hall to see what the commotion was. My co-worker was standing at the door and said, 'Julie, you have to come see this rainbow!' It was so beautiful, and huge! Oh, did I get the chills! I knew Sophie was proud of these first graders! I could not believe my eyes, or the timing! I hope you enjoy this serendipitous story as much as I enjoy sharing it with you.
SFSF thanks Ms. Bartter and her first graders not only for donating $159.63 to SFSF, but also for knowing the true meaning of Christmas and sharing it with others.
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Gianna Ruocco, Sarah Quayle, Savannah Stobe, Fiona Bornhorst, and Marissa Vlasak make their donations. |
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SFSF Database Gets Overhaul
Thanks to new SFSF Board member Kristin Stobe, the SFSF database has been updated and re-organized. This process, although tedious and time-consuming, was so necessary, especially in terms of mailing expenses for the SFSF Annual Appeal (see related article), as well as for the mailing of SFSF brochures and event materials. Of course, the database also contains email addresses which are needed to deliver cyberspace correspondence from SFSF. Anyone reading this newsletter who did NOT receive it via personal email and/or wishes to receive US postal mail from SFSF may be added to the database by sending their personal info to Kristin Stobe, or by clicking the button below. Anyone whose personal information has changed and/or may be changing should also send updates to Kristin. SFSF realizes that not only is this an ever-changing, always-on-the move, society, but also that computer-generated data is only valuable when it is accurate. SFSF thanks Kristin and those who send updates and additions.
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~~~ Heartfelt Sympathies ~~~
Sincerest sympathies are extended to the family of Elric Ian Childress, the Spring, 2012, Smiles For the Season Spotlight. Walking bootless through the heavens and enjoying Harry Potter and Star Wars movies, Elric met his Grandmother McMillian and Cousin Cricket Renee on Sept 9, 2012. |
Stay connected
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